Sunday, December 6, 2015

Cardiology/FEES/New Pediatrician Update

We did it!
Our week of multiple medical appointments has come to an end, and considering
our terrible weekend leading up to it – it actually didn’t go as bad as I
thought it would. Evanna handled herself like a champ and maybe – just maybe,
is getting use to car rides.

First up was
Tuesday (Dec 1) with our back-to-back appointments on opposite ends of the
city…oh and did I mention that it was also on a day that Nick had to work? I
arranged for one of our day nurses to work (we only get about 2 days a week of
daytime nursing hours), but based on Evanna’s weekend (she was incredibly
retchy), I was anticipating the absolute worst. Thankfully Evanna seemed to
finally get over this episode (which I’ll talk about more further down this
post), and our nurse was a great help. First was Evanna’s RSV shot, and while
that went well, I was definitely a nervous wreck in that waiting room – THAT’S
RIGHT, I have now become that mom full of panic and anxiety as my child had to
sit in a room full of strangers and more importantly – icky bugs. When your
child is more prone to catching a virus (via the trach) and an illness can
equal a hospital admission, then you can see my dilemma. I never wanted to be
one of those “helicopter moms”, but after spending over a year in hospital,
it’s kind of the last place I wanna be right now (admissions are inevitable due
to future procedures and surgeries…but I’d like to avoid unnecessary trips to
the hospital, thank you very much).

We then
headed up to the hospital for our cardiology appointment. I actually almost
cried with tears of joy walking through those clinic doors as an OUTPATIENT –
it just felt so good to be there for a regular checkup. First they did an ECHO,
and though the tech had a mini wrestling match with Evanna’s legs – with the
help of good ol’ Frozen, Evanna did very well. She then had an ECG (EKG) and
then finally got to see Dr. Fruitman and Patty (the Cardiac Clinic RN). Dr.
Fruitman said that her ECHO was stable (yeah!!), but it was definitely time to
discuss Evanna’s next Cardiac Cath that was due last month. At the moment,
Evanna requires a Cardiac Cath every 6 months so they can see her collaterals
and maybe even try to balloon and stent them, but because we were trying so
hard to get Evanna HOME and she was stable, her medical team (including her
surgeon in Edmonton) decided it was okay to put it off until the New Year. So
Dr. Fruitman stated that she would present Evanna in the next few weeks at
Cardiac Conference (a conference between the cardiac surgeons and cardiologists
in Alberta, Saskatchewan and Manitoba) and get Evanna booked. We also discussed
on how to actually GET Evanna to Edmonton. Normally this is kind of an
outpatient/mini admission procedure that we would drive up for, but Evanna
isn’t exactly the best traveler at the moment AND she now comes with a lot of
equipment/accessories. While it’s not done too often for an outpatient, it was
agreed that we will admit Evanna down here at the Alberta Children’s Hospital
and then transfer her up I believe by ground ambulance. Evanna is on quite a
bit of oxygen and high ventilator settings, and overall it will just be safer
for her to transfer her verses going by car. Over time as Evanna gets stronger
and on less oxygen/lower vent settings we can definitely drive to Edmonton
ourselves, but in the meantime Evanna is still considered quite “acute”, and we
just want to do everything we can in the safest way possible.

Another
major thing we discussed was Evanna’s calorie intake. Over the last several
months, every time Evanna is weighed, it continues to climb faster than we
would like too (and normally cardiac kids have the opposite problem). We’ve
already decreased her calories a few times, but it seems like we haven’t found
the right spot. You see, though Evanna is 19 months old, due to the fact that
she’s supported by a home ventilator and still somewhat “sedentary” (which will
change as Evanna continues to become more mobile), she does not require as many
calories as someone else her age. It’s something we will always continue to
tweak over the next several years, but in the meantime we have been given the
go ahead to further dilute her formula (so she still receives the same volume
for hydration purposes, but it will contain less calories), and see what her
weight does over the next month or so.

We are
booked for another cardiac appointment just before Christmas to see what came
of the Cardiac Conference, and hopefully get a timeline for the Cath.

On Thursday
Evanna finally had her FEES test that we’ve been waiting for a long time to do.
FEES stands for Fiber-optic endoscopic swallowing evaluation (FEES). A thin,
flexible lighted instrument (endoscope) is passed down the throat so the ENT
can see the esophagus. I initially thought Evanna would fly through it, as she
was completely orally feed the first 5 months of her life and it’s not like we
have secretion issues (we never have to suction her mouth unless she’s puking),
but it seems like we might have a longer road ahead of us then I thought. It
has been determined that Evanna is somewhat at risk for aspirating as they saw
“bubbling” secretions and her upper airway was inflamed and swollen. Dr.
Drummond said this means that we’re looking at a longer road ahead of us in
regards to getting Evanna back to feeding and to be prepared for one to a
couple of years. He did however say that he would like Evanna to receive
“tastes” of foods and that the ENT nurse will call us next week with instructions
on how to proceed.

The moment
Dr. Drummond said all of this, I immediately asked about a GTube. Now that we
know this will be a long term thing and getting back to oral feeding will be a
longer process, I feel like an NG isn’t for us anymore. Yes, it involves
another surgery, but there are lots of benefits to a GTube and we can finally
get rid of the darn NG. Nick and I do not enjoy putting an NG down her nose and
I feel like we’re getting to a point we’re it’s a little detrimental (causing a
little bit of trauma and the inflammation) verses being a benefit. It can also
cause oral aversion as it can actually get in the way and be an issue with
feeding therapy when it’s safe to finally feed Evanna (it’s a tube going down
your esophagus, so I’m sure she feels it every time she swallows). Finally, the GTube will allow us to feed Evanna other stuff besides formula, as some other GTube mamas have stated that we can feed her some "blended" foods and will get me all those resources when the time comes. Dr. Drummond
said it’s definitely something we should consider, but to talk to our
pediatrician about to put a referral in for us.

On Friday we
finally got to meet our lovely pediatrician. We actually had a different
pediatrician last year before Evanna’s first open heart surgery, but Nick and I
weren’t huge fans of him. When I began to talk about the situation to another
local 22q mom (who happens to be a family physician herself), she mentioned Dr.
Culman who apparently was very knowledgeable and had lots of experience with
both medically complex kids and has a few 22q11 kids under her care. So just
before we transferred out of the PICU back in August, I asked if they could get
us a referral, and thankfully she accepted Evanna as a patient. During the
appointment we talked about Evanna’s retching episodes and stated that after
talking to several 22q moms, I feel Evanna has something called Cyclic Vomiting
Syndrome (CVS) as it’s listed as one of the symptoms of DiGeorge Syndrome. As
there really isn’t a test for CVS, it’s hard to diagnose so Dr. Culman asked me
what treatments others were doing. I first asked if we could get a prescription
for Zofran to help elevate the severe nausea Evanna experiences and well go
from there. There are a few other things that other 22q moms mentioned to me
for treatment options and so if the Zofran doesn’t work, we’ll try those and
maybe even consult with a GI doctor.

We then
brought up a GTube, and Dr. Culman agreed immediately. Most kids with trachs
have GTubes anyways, and an NG is only meant to be used as a short term option.
A GTube is a safe and reliable way to feed a child for a longer period of time.
You don’t run the risk of formula going into their lungs and if Evanna gets
sick, there is a secure way to give Evanna meds and keep her hydrated. They’re really
easy to keep clean and change out and once Evanna doesn’t need a GTube, you
just take it out and the hole closes on its own. Dr. Culman said the process
can take a few months however (it’s not an emergency surgery… so we now have to
learn to be patient for surgeries – something we’re generally not use to lol),
but she’ll put in the referral immediately.

So that’s
basically where we stand from a medical standpoint. I feel like we’re still in
that “transition” period of being home, but as more and more time passes, I
know we’ll see the inside of the hospital less and less. Everyone is happy with
how Evanna is doing and we will continue to move forward as Evanna allows us
too.

Basically in
the immediate future, we are going to continue to work on Evanna’s development
(PT rescheduled and will be coming this week!), and she has a Cardiac Cath in
Edmonton at the Stollery and GTube surgery planned over the next several
months. As for other medical appointments for the month of December, we have a
Complex Airway Clinic (CAC) appointment this week where we hope to lower her
oxygen requirements from 4L to 3L and do a planned trach change. Then we have
another RSV shot in a few weeks and a Cardiology follow-up just before
Christmas to find out the Cath timeline.

We have some
fantastic Christmas plans for Evanna, and I can’t wait to enjoy our first real
holiday at home (in Canada, Thanksgiving was back in October)! We’ve almost
been home for an entire month and we’re thrilled at how smooth everything has
gone so far. We have amazing friends and family who have been so accommodating, and I
feel like we’re finally getting back into our old routine. Our friends have
been so great and I feel so blessed to have them, as we’ve had several get
togethers over the last several weeks since we’ve been home, and knowing how
much work it is to take Evanna out, have allowed all the gatherings to be at
our house. We’ve been having so much fun and I seriously can’t describe how
amazing it's been to just LIVE!

Dominic has a G-Tube, and it took some getting used to. Because Dominic was never really orally averted, he just didn't eat enough. His cleft made eating more work so he'd tucker out and fall asleep before he finished his food. Anyway, I'm not sure if doctors are of the same opinion in Alberta, but we were told that if he has the g-tube for longer than a year, then it takes a surgery to close the hole, and he also has to not use it for 6 months before they will consider taking it out. Just something to get clarification on. It sounds like she needs it, so I'm sure you'll want it for her anyway, I just don't want any more surprises for you...

They called me this past Monday and we meet with the surgeon on Dec 15 who I'm sure will go more into everything and all the technical stuff. I want it, but Nick is on the fence. Knowing that feeding is going to be a long term issue makes me believe a gtube will be better for Evanna in the long run.